JAK1 inhibitor Rinvoq quickly returns severely ill ME/CFS patient to health - Parts I and II
- Condition
- ME/CFS
- At worst
- Not stated
- Ill for
- Not stated
- Published
- May 2025
Summary
Took Rinvoq (upadacitinib) for two months without stating a dose, and describes it as not an easy drug to take. The gains were concentrated in the autonomic nervous system: orthostatic intolerance normalised with no further blood pressure drop or pre-syncope on standing, temperature regulation and appetite returned to normal after feeling famished most of the time, severe insomnia gave way to a normal sleep pattern, and stamina improved somewhat. The improvements emerged after she stopped the drug rather than while taking it, and had held for five months at the time of writing. Exertion intolerance remained, with roughly a day of PEM if she overdid things.
Symptoms mentioned
Symptoms: Brain fog, POTS & dysautonomia, Post-exertional malaise, Sleep problems, Temperature regulation.
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